Yuliia is a young woman with a law degree who, according to her husband, has a sharp tongue and a great sense of humor. She loves reading with a cup of coffee, hanging out with friends, and taking evening walks with her dog.
In this atmosphere, the couple is raising their 12-year-old daughter Sofia. She also never washes dishes or cooks dinner. However, this is not by choice, but a consequence of multiple sclerosis. Recently, she has started calling herself a skilled driver, because she “ races” through the streets of Frankivsk in her electric wheelchair. In the near future, she plans to take an IT course.
Read the story of Yuliia, who lives without imposed boundaries, in the article by GLUZD and the League of the Strong.
Life that suddenly changes focus
Yuliia calls herself an “average child of the 90s.” She says she was like everyone else, had the same toys, entertainment, and schedule. She studied in Ivano-Frankivsk. She does not consider herself an excellent student, but rather an average one: she studied diligently, but never focused on grades, so now she does not demand this from her daughter. In ninth grade, Yuliia fell in love with law, so a year later, she was already studying it at an agricultural college. Between classes, she and her friends would walk around the city and go to discos, where Yuliia met her future husband, Stepan. She graduated from college with honors, and the next step was the university, where she enrolled in Lviv. Everything was going well, but in her fourth year, while writing her bachelor’s thesis, the girl noticed strange changes in herself.
«That’s when I first started to notice something was wrong. I was very worried and anxious. I had disturbing dreams; in fact, I couldn’t sleep at all. I also had vision problems; when I looked at something, the image would blur and disappear, like in a movie. I didn’t understand what it was, but I was frightened, so I went to see a doctor. She laughed at me and said that I was just very nervous, like most students, and that it was normal. She prescribed sedatives, and over time, everything returned to normal, as I thought. But now I understand that these were the first signs of my illness.»
Despite the stress, the woman also graduated from university with honors. She got married, enrolled in a master’s program at a Carpathian university, and soon became pregnant with a daughter. She says that this period was physically difficult and exhausting, and that her baby, Sofia, was fussy, so Yuliia and Stepan had many sleepless nights. When her daughter turned one, breastfeeding ended, and a week later, the woman’s condition worsened. She says that images flashed before her eyes again, and when she walked, it felt as if the ground was very soft and her feet were sinking into it. After that, the woman immediately went to the regional hospital.
Multiple sclerosis — a diagnosis you don’t expect at 24
«After the MRI results, the doctor said, ‘You have multiple sclerosis.’ And I said, ‘What sclerosis? Are you serious?! I’m only 24 years old, sclerosis is a disease of older people’.»
Yuliia spent some time in the hospital, underwent more tests, and hoped that the diagnosis was wrong. She sadly recalls that the doctors she encountered at the time were not the best; they were indifferent and intolerant.
«A doctor came to me and said, ‘Do you have a husband? Tell him to leave you. You’re going to be disabled (a person with a disability, ed.), you’ll be in a wheelchair. Who will want to take care of you?’».
I was still walking. My husband came to me, and I said to him, ‘Stepan, leave me. The doctor said I’ll be in a wheelchair and you won’t be with me. Let’s get a divorce.’ He just replied, ‘Either you’ve been drugged or I don’t know what’s wrong with you. And we went home».
There is no cure for multiple sclerosis, only medications to maintain the condition, but, as Yuliia admits, she hoped at the time that treatment would not be necessary and the disease would not progress. So, until she was 30, she did not take much care of her health. She only went to the doctors when complications arose, which usually happened twice a year, in spring and autumn.
«I was so young and, probably, stupid. But, you know, I believed so much that it would hurt, then it would pass and never happen again… But that didn’t happen.»
Multiple sclerosis—is a chronic disease of the central nervous system that affects the white matter of the brain and spinal cord. The disease also affects the optic nerves. More than 2.5 million people worldwide have multiple sclerosis. In recent years, the prevalence of this disease has increased. The causes of the disease are still unknown, but symptoms may include: deterioration or loss of vision in one eye, accompanied by pain, double vision, progressive sensory disturbances and/or weakness in the limbs, problems with maintaining balance, unsteadiness or clumsiness, and back pain.
For more information, visit the website of the Ministry of Health (ed.)
Until 2020, despite the complications of her illness and the physical difficulties that developed, Yuliia was working in the human resources department at Nova Poshta. It was hard, but she liked her job and interacting with people; she calls herself an extrovert. At that time, she already had a second degree of disability, and her health was getting worse.
Now, Yuliia has a first-degree disability and needs outside care, so her desire to work no longer mattered, and she was denied employment.
«That is, all these previous years I was walking. I dragged one leg slowly, then the other, but I walked, as if stumbling, and this went on for quite a long time. It was only short distances, but still. And then, I think, with each subsequent exacerbation, the part of the brain responsible for walking was affected, and since then, I have been in a wheelchair and need outside care.»
In 2021, on the recommendation of her doctor, Yuliia had an appointment with Nazar Vasylovych Romaniuk and became a participant in the medical program. She waited in line for another year, and the start of the program coincided with the beginning of the full-scale invasion. Yuliia recalls that she thought there would be no program because of the war, as who would want to deal with it now? But then a nurse called her and said that she was first in line among the candidates for participation and that they were expecting her at the hospital in a few days.
Within the program, Yuliia receives free injections of the drug with the active ingredient ocrelizumab, which partially slows down the progression of multiple sclerosis. The price in Ukraine exceeds 100,000 UAH per vial.
Treatment under the program ends this year, and Yuliia is sad about this because she says she finally felt as well as possible and completely trusts her doctor, which is important to her after so many disappointments.
«Maybe if I had found someone like Romanyuk a few years ago, I would still be able to walk now. Back then, at 25, I didn’t go to the hospital. I went for apitherapy, or bee stings. I sincerely believed that it would cure me. Just like that — and I would be healthy. I received 600 stings per season. I was covered in swelling, especially my neck. Now I would do everything differently, because I probably chose a not very wise path. However, I was frightened and desperate, so I grabbed at any chance I could.
Every year, Yuliia undergoes rehabilitation at the “Donbas Prykarpattia” center, and every quarter she needs several massage sessions, each costing 500 UAH, which her pension does not cover. At home, she also exercises on a special exercise bike to develop her muscles.
This year, on the recommendation of her doctor, Yuliia met with coordinators from the League of Strong, a public association, and received financial assistance for her treatment as part of their cooperation. She says she doesn’t know why she is so lucky, but she is very grateful for these valuable connections and the help she has received.
Family atmosphere
There can be nothing positive about illness itself, says Yuliia, but it definitely changes not only your routine, but also you as a person. Previously, she considered herself a believer who attended church once a year—at Easter. But the struggle with illness turned Yuliia’s worldview upside down. She says that now church and prayer are a form of meditation for her and a way to thank God for still caring for her and helping her fight.
«I feel it now, but if I hadn’t been sick, I don’t know if I would have come to this.».
Yuliia loves to read. She says that the first thing she did when she entered the bookstore was to look at the shelves and search for the book she wanted to buy. Today, it is “ The Seven Husbands of Evelyn Hugo.” Books work like a battery and a sedative for women at the same time. Unfortunately, according to Yuliia, few bookstores in Ivano-Frankivsk are adapted for people in wheelchairs, but there are still a few, and SENS is one of them.
While her daughter is at school, Yuliia reads or watches TV series, and often reads the Bible.
She jokes that women would envy her: she doesn’t wash dishes, dust, or clean windows. She might put things in the washing machine, but isn’t that a dream? Her husband takes care of all the household chores, and her mother also helps.
«In theory, it sounds great, but in practice, not so much. The price for such a break from household chores is too high. And in reality, not working is very boring».
Although Yuliia cannot physically help with household chores, she always keeps Stepan company. Her husband works in the restaurant business and is a great cook; his wife loves his salads and buckwheat.
— Honey, tell me, what is my favorite food?
— What do you mean? Whatever my pension can afford. Buckwheat, that’s all. We don’t buy butter because it’s too expensive.
In fact, there is a big problem behind these jokes. Stepan says he doesn’t understand why a person with a first-degree disability who cannot work receives only 3,000 UAH in pension per month. According to his calculations, this money is only enough for buckwheat and bread, and even then, he is not sure if it will last a month. The family does not have financial difficulties, but the husband provides for everyone. He emphasizes that this is unfair to his wife because the state does not actually provide much financial assistance.
Even on their way to the interview, the couple encountered a problem. They needed to take trolleybus No. 6 to get to the café without changing buses, but the trolleybus did not have a ramp, so the family had to find another way to get there. And this is only part of the difficulties faced by people with disabilities.
Yuliia says, “Fairness is important to my husband, and when there is no ramp on public transport or when other people sit or stand in the seats reserved for people with disabilities and don’t see anything wrong with it, he gets really angry because he worries about me.»
Motherhood, dreams, and goals
«I think I’m a bad mom because I let my daughter do too much,», says Yuliia.
At the beginning of her pregnancy, the doctors were sure that she would have a boy, but Yuliia dreamed of having a daughter, so when Sofiia was born, she was overjoyed. Everyone told her, “Now you’ll have a helper,” and that’s exactly what happened. Now her daughter is 12 and she is very independent, doing her homework without help, with her parents rarely intervening. In the morning, she attends art school. When necessary, she helps her parents with household chores. Yuliia is afraid that she is not present enough in her daughter’s life and that she cannot be caring enough for Sofiia. But the woman loves her daughter madly, and school grades or everyday trifles are completely unimportant to her; only her daughter’s happiness matters. Therefore, Stepan is the “bad cop” who monitors Sofia’s studies, time spent on the phone, and other things. In the evening, they all go for a walk with their dog Tima and share how their day went.
Yuliia says that her family and friends provide her with physical support and moral encouragement.
«I thank God that I have such a family, that they are all there for me. I would probably have given up on myself. They don’t let me give up and fall into depression.»
She dreams of working physically again, but thinks it’s almost impossible. At the same time, she says, “My head is in the right place,” and Yuliia wants to take an IT course. Her husband supports the idea, but she hesitates.
«I’m afraid it won’t work out. That is, I’ll waste my time. It’s not a good attitude, but for now, I need some kind of push.»
Last year, Stepan gave Yuliia that push. She dreamed of going to Medjugorje to relax and pray. She had been there with her parents as a child and really wanted to show her husband and daughter the area. One day, her husband came home and said that he had bought a ticket and that they would be going on a trip in a few days. The woman recalls that she didn’t even know whether she was more scared or happy, because she hadn’t traveled so far since she had been confined to a wheelchair. They traveled by bus, and the mechanical wheelchair was in the luggage compartment. When they crossed the border, the border guards initially did not believe the documents, thinking that Yuliia was healthy and just wanted to take her husband out of Ukraine. After explanations and a lengthy check, the family successfully left the country and spent their family vacation there. Yuliia says that the trip was magical and proved that it is worth overcoming your fears. The family hopes to go there again next summer.
«With this story, I wanted to say: you see, I live a full life. Despite the wheelchair, which really restricts me physically, I live a great life. So much so that sometimes I forget that I am a person in a wheelchair. Maybe it’s because of my inner state. Sometimes people look at me with surprise, and I don’t understand why they react that way, and then I realize: oh, I’m in a wheelchair.
I have people I can rely on, and when a person feels supported, they have no limitations, even if they have a first-degree disability. It’s just that every situation in life, like mine, happens for a reason. I have no idea why, but that’s just how it is. I don’t have an answer, but I believe that my path is not in vain, with all its mistakes and adventures».
This material was created with the financial support of the German Federal Foreign Office (GFFO), CBM, and the European Disability Forum. The views expressed in this material are those of the authors and cannot in any way be considered the official opinion of the financial partner and the European Disability Forum.
Journalist: Ulyana Fenyak
Photo: Oksana Danyshchuk